of the Federal Interagency Workgroup on Multiple Chemical Sensitivity
Dear Mr. Donnay, I thought you'd like to see the copy of our organizational response to the ATSDR MCS report. Thank you very, very much for providing so much good information for all of us. This was a great help in writing this letter.
Dec. 7, 1998
Ms. Alice Knox
ATSDR Information Center
1600 Clifton Road, Mail Stop E57
Atlanta, GA 30333
Re: A Report on Multiple Chemical Sensitivity (MCS) Predecisional Draft August 24, 1998
Dear Ms. Knox and Associates of the Interagency Workgroup:
The Environmental Health Network (EHN) of California has served the chemically injured community for over ten years. We are one of several organizations working on the front lines of this public health disaster. The people who contact us are sick and scared. They have become partially or completely disabled. They have lost their health and have lost or are on the verge of loosing their jobs, families, friends and even their homes. There is no group of people in this country as underserved and needy as those with environmental illness and multiple chemical sensitivities. And this population is growing.
While we in this community are appreciative of your initial attempts to define the scope and policy issues surrounding this public health disaster, we unfortunately find that this draft does not do justice to the problem or to the patients suffering from this condition.
This may be partially due to the chemical industry bias ingrained in this predecisional draft, as represented by your choice of Dr. Frank Mitchell, a board member and chair of the Environmental Sensitivities Research Institute (ESRI), as the main writer and consultant for this report. ESRI is funded by representatives of many chemical manufacturers. His ties to the chemical industry are not disclosed in this report. Even Bette Hileman2s 1991 special report on "Multiple Chemical Sensitivity," published by Chemical & Engineering News, does a somewhat better job of presenting a balanced perspective on this complicated issue.
Your omission of many key studies make this document ineffective and incomplete. Among other studies and focuses that will have been suggested by other letterwriters, please include the following:
1) the results of the US Dept of Veterans Affairs (NJ Environmental Hazards Research Center) study of Gulf War veterans. Preliminary findings, published in 1996, indicate 26% had MCS.
2) a more thorough discussion of toxin induced porphyria, which should not be dismissed as lightly as in your report. Apparently an enormous percentage of MCS patients (90%) who have been tested for toxin induced porphyria test positive for this. Here is one set of laboratory markers! For a wonderfully lucid discussion of toxin induced porphyria, please read pgs. 31-58, Defining Multiple Chemical Sensitivity, edited by Bonnye Matthews (MacFarland). This chapter includes over four pages of references.
3) US EPA research on MCS and the pesticide chlorpyrifos (Dursban) reported in 1997 by the Office of Prevention, Pesticides and Toxic Substances.
4) research on chemosensory perception, funded since 1988 by the US National Institute on Deafness and Other Communication Disorders.
5) reports published by Dr. Philip Landrigan, of the US National Institute on Occupational Safety and Health, in 1983 and 1985, linking solvent exposures to a "neurasthenic syndrome."
6) studies on fragrance and air freshener toxicity published by Drs. Rosalind and Julius Anderson in the Archives of Environmental Health, Nov.-Dec. 1997 and May-Apr. 1998.
7) the July-August issue of the Environmental Access Research Network's Medical & Legal Briefs on "Perfume Toxicity, Sensitivity, Accommodation & Disability, Part One: Evidence of Health Hazards." This is another important publication with excellent references. Obtain by calling (701)837-0161.
8) the other government agencies. According to Albert Donnay of MCS Referral and Resources, there are at least fourteen other federal authorities with MCS policies that should be represented and referenced in this document.
9) the human face of MCS and chemical injury. Please read The Dispossessed, a book of photos and interviews of people with MCS by Rhonda Zwillinger. Contact The Dispossessed Project at PO Box 402, Paulden, AZ, 86334-0402 or email email@example.com for a copy.
And please keep in mind that taxpayers and policy makers deserve more thoroughness in such reports, which are costly to research and produce. And we, the chemically injured taxpayers, deserve more than lip service to the fact that we do have a problem, of some kind or other (even if you don't know exactly what it is). It is not acceptable to draft a document which might lead employers, co-workers, health care professionals and public policy makers to perceive chemically injured people as malingerers with a psychosomatic illness. This attitude has already caused untold hardship and misery for thousands of people who need care and support. It has caused many people who were formerly productive to become jobless and virtually "unemployable."
The volunteers and board members of EHN would like you to know that for every letter you receive from organizations and individuals like us, there are thousands of other people too chemically ill to even read your report. These people cannot respond to it. They are not able to tolerate print materials, paper, ink, computers or even a visit to the post office. They may even be homeless, as one poor woman who recently had her throat slit on the streets of San Francisco. According to her brother, who was quoted in the San Francisco Chronicle, the murder victim was a formerly prosperous owner of a popular beauty salon who became disabled from chemicals she used in her business. I suspect she became homeless not just from her lack of income, but as a result of her inability to tolerate the chemicals in most indoor environments.
Please consider in your next draft how the work you produce will affect the lives of all of us who are already living with chemical injuries and disabilities. Please consider how the your work may prevent future cases of chemical injury as well.
Amy Marsh President, Environmental Health Network